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An Unusual Day, Quite a Contrast with the Day Before

 

Caregivers for people with dementia recognize the need for flexibility. They know that things can and do change rather rapidly. Such was the case with Kate yesterday. I am glad that everything went so well the day before. Yesterday was certainly different.

We had a good start when she awoke around 7:45. I took her to the bathroom, and she took her shower without a problem. As I started to dress her, I was feeling optimistic. She wasn’t fully dressed when she wanted to lie down. That is not unusual, and we had plenty of time, so I told her she could. I gave her about ten minutes. Then I tried to finish dressing her. She wanted a little more time. I wasn’t concerned. I knew I could let her sleep another two hours.

At 10:45, I felt it was time to get her up. That would allow us to leave for lunch between 11:30 and 11:45 and get back for the sitter at 1:00. I encountered a problem when she didn’t want to get up. I told her I would be leaving for the Y and would like to take her to lunch before Mary arrived. She didn’t want to get up and told me to go ahead without her. I told her I didn’t want to leave her alone and that I really liked eating with her. Then I asked if she would do it for me. She still didn’t want to get up.

That was something new. She had always been willing to cooperate with me and get up even when she didn’t want to. I knew something was wrong and asked if she was feeling all right. She first said, “I don’t know.” Then she said, “I just feel blah.” I felt she was in a depressed state and said, “You seem depressed.” She said she was. Then I said, “If you are, I think I might be able to help you, but I would need you to get up. I think I can make you feel better if we go to lunch together.” She wasn’t buying that.

I tried several things to see if I could help her out of this state. I showed her a few photos from her “Big Sister” album. She smiled at the cover photo, but didn’t’ show much interest. Then I read about her grandfather in another book. I couldn’t find anything to help her.

It was then that I reminded her that Mary would be coming and that she could help her dress although I thought she might prefer me to help her. She agreed, but she still wouldn’t get up. I decided not to push her. I told her she could rest and that Mary would help her dress. She said she was fine with that.

When Mary arrived, I explained what had happened and took her back to the bedroom. I told Kate that Mary was here and that I was leaving. She greeted Mary with a smile. They exchanged a few pleasantries, and I left.

I checked via the video cam while I was gone and also called Mary once. Kate remained in bed the entire time. I had a feeling that it was easier to tell me she was fine with Mary’s helping her dress than to actually let her. When I got home, she was still in bed but awake. She smiled at me. I could tell by the expression on her face that her depression was over.

Mary left, and I asked Kate if she would like me to take her out for dinner. She indicated she wanted to go to the bathroom. I took her and helped her to the bathroom and finished dressing her. She acted as though there had never been a problem. I never brought it up. I feel sure she began to recover and wanted to go to the bathroom but felt uneasy asking Mary to take her. The rest of the evening was quite normal. We both acted like nothing had happened.

Kate has had a minor problem with depression since the early days of our marriage, but it has never kept her from doing anything. I never recall a time when she felt “blah” and wanted to remain in bed. Like all of her other behaviors, I can’t explain what brought this on. My suspicion is that it involves her keen awareness of how little she is able to do. She has been especially insecure the past few days, not only in her behavior but also in her verbal expressions. Fright has typically been the most negative of her responses to what she is experiencing. It doesn’t seem strange that depression might be a natural response as well.

For me, there is a big difference between fright and depression. I have always been able to reduce her fright, but I couldn’t break through her depression. Like fright, depression may not occur regularly. I plan to have a talk with her doctor and the doctor’s social worker. I want to be better prepared next time.

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More of the Same

I had just passed the halfway point in my walk at 7:35 yesterday morning when I saw that Kate was about to get up. I went to the bedroom and discovered that this was another morning of the same kind of confusion and anxiety that I have seen more of in the past ten days. It seems like it’s becoming a pattern. She looked very confused. I am sure she didn’t know me, but I didn’t say anything that might have prompted her to tell me.

I told her I was there to help her. She said, “I don’t know what to do.” I said, “Usually you want to go to the bathroom.” She asked why, and I tried, unsuccessfully, to explain. Then I asked her to come with me. She agreed to go with me to the bathroom although she had a look of apprehension on her face. As on other mornings, she periodically said, “Help me. Please, help me.” I assured her that I would. She was very dependent on me to help her with everything. From the bathroom, I took her back to bed. She said, “I wish you could stay with me.” I told her I would be happy to stay. I went to the kitchen to get my things and returned to the chair right beside her side of the bed. She was asleep very quickly, and I returned to my walk.

The rest of the day went well. She was happy to see the sitter and happy to see me when I got home. She did say she wanted to go home. I told her I would take her. We went to dinner. She never said another word about going home.

She watched the news with me but looked rather bored. I asked if she would like to get ready for bed. She did. I put on a YouTube video of a concert of music from My Fair Lady. She enjoyed it. As usual, she was still awake an hour after the concert but was very much at ease. We ended the day on a happy note.

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Morning Confusion and Fright, But a Pleasant End of the Day

Kate was sleeping soundly when I woke her about 10:45 yesterday. She got up without a problem. I thought everything was fine. It wasn’t until I helped her out of bed that she showed any signs of fright and confusion. It was a time when she didn’t have any idea of who I was but gladly responded to my assistance in every way. I told her I was her husband, and she said, “No.” I said, “How about good friends?” She said, “That’s better. She depended on me to tell her what to do and how to do it. For example, washing hands and brushing teeth were like she had never done either before. I was very careful not to rush her. I knew she had plenty of time to be ready for the sitter. That may have helped. I know she didn’t get irritated with me at all.

After she was dressed, she was disoriented. I took her through the hallway outside the bedroom to see photos of her mother and grandmother. She often guesses the photo of her mother is of her. This time she had no idea. She also expressed less interest in the photos than the past. Then we went directly to the kitchen for her morning meds. That went smoothly. When she had taken the last one, we had a few minutes before the sitter was to arrive. I told her she would be going to lunch with Cindy, and I was going to Rotary. I don’t remember her exact words, but she sternly said something like, “You are not.” I asked her to come with me and took her to the family room. I showed her The “Big Sister” album. She didn’t recognize herself or her brother in the cover photo.

We sat down on the sofa, and I opened the album and showed her the pictures on the first few pages while giving her a commentary on them. Her interest grew. A few minutes later when Cindy arrived, she was happy. Cindy sat on the other side of Kate, and I went to the kitchen to get my things. I walked back to the room to say goodbye and noticed that they were looking at a picture of Kate’s parents. I made a comment about them, and Kate said, “How did you know?” I told her that I knew her parents. She turned to Cindy and said, “I don’t even know who he is.” I said goodbye while the two of them continued looking at the photos. She didn’t show any concern that I was leaving. I felt good that she was comfortable with Cindy.

When I returned home, Kate was, as usual, lying down on the sofa but not asleep. She didn’t express any enthusiasm about my being home, but she wanted me to help her up. I discovered a few minutes later than she was ready to leave. She wanted to go home. I took her to Panera and got her something to drink. She worked on her iPad, and I did the same on mine. She got along pretty well on her puzzles without much help from me. An hour later, I suggested that we eat dinner there instead of going for our usual Mexican meal. When we finished, I took her back home. She didn’t say anything more about going home. This routine of leaving the house for “home” has worked each time I have tried it. That makes it an easy to address this problem. It is certainly better than telling her she is already at home.

Kate worked on her iPad for almost an hour after our return, but she had great difficulty with her puzzles. I was seated in a chair across the room from her watching the evening news. Every few minutes I had to get up to help her. She tired of this before I did and asked if she could get ready for bed. I turned on YouTube with a series of Andre Rieu videos that she enjoyed for an hour and a half. Then I put on some especially relaxing music on our audio system. When I got in bed, she was still awake but very relaxed and happy. That was two hours after she had gotten to bed. That is rather commonplace now. It may be that she isn’t really that sleepy. She just needs to rest her brain for a while. The music relaxes her. She doesn’t have to hurry to get somewhere. And she doesn’t have to experience any of the normal frustrating or intimidating situations she does at other times of the day. Living with Alzheimer’s is an emotional ride.

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Yesterday’s Roller Coaster Ride

One week ago today, Kate had her most difficult day. Yesterday was another day, the third in a week, that Kate has experienced similar symptoms. She was very tired, confused, and troubled/sad. She was smiling when I got her up. I helped her dress without a problem.

Everything was fine until we started to leave for lunch. I walked ahead of her from the bedroom toward the kitchen. She was coming out of the bathroom and didn’t see where I had gone and called to me. I turned around and went back. She was frightened. She said, “I know you wouldn’t leave me, but I didn’t know where you were.” That set the tone for getting to the car for lunch as well as leaving the restaurant and getting in the car there. She was simply frightened but didn’t know why. As she had done the day before, she said, “Help me. Help me.” as she got in the car. She got along well at lunch.

The worst time was during the afternoon after she had been resting for almost two hours. After that, I suggested that I read to her. That appealed to her, and I read a little from Charlotte’s Web. Her eyes were open, but it didn’t appear that she was paying attention. I stopped and asked if she was enjoying my reading to her. She seemed to be in a trance. I told her I would stop if she wanted me to. When she didn’t respond, I said in a louder voice, “Can you hear me?” Although she had her eyes open, she responded as though I had waked her from a deep sleep. Then I repeated my questions. She didn’t want me to read. She was tired and wanted to rest.

I agreed to that and remained in my chair close to her recliner. She became talkative but was delusional. I told her she looked frightened. She said she was. I asked if she could tell me why. She said, “I don’t know.” I told her I would like to help her. She said, “They want to kill me.” I asked who, but she didn’t know. We had just finished a chapter in Charlotte’s Web in which they talked about Zuckerman’s intent to kill Wilbur. I suggested she might have gotten the idea from that. She acted like that might have been a possibility. I feel sure it was.

Once again, she said she was tired. I felt like I should do something to divert her attention to whatever she was afraid of. Instead I let her rest a little while. It wasn’t long before she was talking about the house. It was obvious she didn’t realize we were at home. I shifted gears and told her I would like to show her something and asked her to come with me.

I took her hand and walked her to the living room where I pointed out several things that had come from her parents’ home. She was interested but sad because she said, “I never got to know my parents.” Then she went on to say that they had had a rough life and grew up poor. She also said she couldn’t remember anything about them.

She was most interested in a fresco we had bought in Italy fifteen years ago. It was the first time in the past year or two that I recall her being taken with it, even more so than some of the things that had belonged to her parents. She wanted to sit down on the sofa. Then she began to talk about the room. She said she “liked what they had done to the room.” My reminding her that we bought the fresco did not convince to her that this was our house.

It was very clear, however, that her mood was changing. By the time we got to the dining room, she was quite interested in several other items that had come from her parents home. It wasn’t quite 5:00, but I suggested that we get ready for dinner.

She was a little bit skittish getting in and out of the car and from the car to the restaurant, but she seemed fine otherwise. When we got home, I suggested that we sit together on the sofa in the family room and go through one of her photo books that features a family wedding veil that had been purchased by one of her aunts for her wedding in 1924. She was enraptured.

When we finished, we began a conversation about our marriage and the happy times we have had. It was a touching moment for both of us. Earlier I had made several recordings. I am especially glad that I recorded this one. There is quite a contrast between this conversation and the others. She was happy again.

When we finished, we went back to the bedroom where I put on some YouTube videos and helped her prepare for bed. Everything went smoothly. She was fine, but we had had some rocky moments. It was another successful example of diverting her attention from whatever was bothering her. It also reinforces my previous guesses that when she is passive, her mind wanders. She begins to imagine things that are problematic. Yesterday, it was women who were out to get her. I don’t know how long I’ll be able to divert her. I am glad that I have a number of different things that help – music, photo books, tours around the house, conversations about family and our marriage. I can’t depend on just one to come to the rescue now. The good thing is that it is still possible to turn her around, but it’s getting harder.

I was very disturbed by her rambling during the afternoon and suspect I haven’t seen the last of this. She is entering a new phase of this disease, one I don’t like. When she bounced back, I did as well. We had an especially good time with the photo book, and the day ended on a high note.

Although I feel better now, I believe she has taken a sudden decline. I have read other caregivers accounts of similar declines. In fact, one of those was reported in a Facebook post yesterday. I also know of a former college roommate who took a steep decline and died about a month after Kate and I had been with him and his wife. I know someone else with dementia who died less than six months after I last saw her and thought she was doing quite well. While I am not ready to let her go, I would prefer that she go quickly rather than lingering for years. I have suspected the latter since she currently has no other medical conditions that might shorten her life. That, of course, is beyond my control. I will continue to focus on keeping her happy and secure.

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Another Day of Confusion

Kate got off to a rough start today, and I feel that I may have played a part in creating the problem. This is a day when I felt I didn’t need to rush her to get ready. I turned on some relaxing music to wake her gently. After thirty minutes, I decided it was time to get her up. I did something I don’t usually do. I turned off the video cam and went to the bedroom. She was sleeping very soundly, so I decided to let her sleep a little longer.

About ten minutes later while I was in the kitchen, I heard her make a noise. I heard her again as I walked to her. (I would have heard her get up if I hadn’t turned off the video cam.) I could tell she wasn’t in the bedroom and said, “Where are you?” She said, “Right here.” She was in the hallway walking toward our bedroom. She had gotten up but didn’t know where she was and must have wandered to one of our other bedrooms. She was frightened and said, “Help me. Help me.” I went into “comfort mode” and told her I could help her with anything she needed. She told me she didn’t know what to do and repeated “Help me.”

I took her to the bathroom and then back to our bedroom where I had laid out her clothes a little earlier. She continued to be frightened and repeated her plea for help numerous times. There were moments when she seemed to calm down. One of those occurred when I showed her a photo of her mother in the hallway outside our bedroom,  another as we walked through the family room. When we reached the kitchen, I gave her her morning meds. She didn’t know what to do with them. I explained and coached her step by step.

She was very unsure of herself as we went to the car. As you would expect, I put on some music that I thought she would like. I think she did, but she was very quiet all the way to the restaurant. I remained silent thinking that the music would do a better job calming her than I could.

She was very confused at the restaurant, at least until she had eaten most of her meal. I worked hard to show her the salmon on her plate. She couldn’t distinguish the salmon from the sweet potato fries. I gave up and used her fork to pick up a piece and fed it to her. After a couple of forksful, she fed herself. She enjoyed her meal. She even ate about half of the mixed vegetables. She rarely eats any of them. She was calm until it came time to get up from the booth and walk to the car. She was very insecure, actually frightened, and held on to me tightly.

We returned home about 2:00, and Kate rested in her recliner. She was in and out of sleep. At one point, she opened her eyes and lifted her arms toward the ceiling. It appeared that she was looking at something or someone. She smiled. Then she closed her eyes again. Moments later she opened them and looked uneasy. I got up, walked to her and held her hand. I said, “You looked frightened? Are you?” She nodded. I asked if she could tell me what was frightening her. She didn’t know. I told her I was here with her and would help her with anything she needed. She didn’t say anything but squeezed my hand, and I took a seat in the chair beside her.

She woke up a little while later. I asked if she was relaxed. She said she didn’t know. I asked if she was frightened. She didn’t know. Then I asked if she would like for me to read to her. She wasn’t sure about that either. I told her I would like to read something to her and picked up The Velveteen Rabbit and started reading. As I read, she kept saying “Huh” as I read something new. The more I read, the less she did this, but she never completely stopped. And I never stopped reading, I wasn’t entirely sure that she was enjoying what I was reading, but she didn’t show any sign of going back to sleep. Several times she responded appropriately to parts that were sad.

When I finished, I said, “Isn’t that a nice story?” She nodded. Then I asked if she was glad that I had read it. She smiled and said she did. It was clear that her mood had turned around. She became more animated as she looked out at the back yard where the wind was blowing through the trees and shrubbery. She kept pointing to things that she wanted me to see. As we looked through the sky lights, I commented on how fast the clouds were moving, and we watched as they drifted by from West to East. We must have watched and talked about what we were seeing for fifteen minutes before she took note of the poinsettias in the room. She was quite cheerful.

Then I went picked up a photo of her and her brother when they were about four and two and showed to her. I was pleased when she said, “That’s my brother.” She commented on his smile and then looked at her picture and said, “That’ me.”

I had put on a Chris Botti album a little earlier. The last song on the album is “What a Wonderful World.” It caught her attention, and we talked about the song and how much we liked it. She was again at ease. Reading, admiring the trees and shrubs, photos, and the music turned out to be the highlight of our day.

She was fine until we got ready to leave for dinner. Once again, she seemed afraid. She was distracted by her meal. It was a big serving, and she ate almost everything and seemed fine as we left for home.

At home, she worked puzzles for a few minutes before wanting to get ready for bed. That took a little more time than usual. She required more help from me. After she was in bed, I turned on a series of YouTube videos of Andre Rieu. She is lying down in bed listening to the music and seems content. I think the chances are good that we’ll be back to “normal” tomorrow, but one never knows.

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Our Roughest Day, But, Again, a Nice Finish

Yesterday, as I walked out of the bathroom to get dressed, Kate said, “Hello.” I went over to the bed. She was uneasy. It turned out that she had awakened while I was in the bathroom and didn’t know where I was. Several times over the next ten minutes or so, she said, “I didn’t know where you were. I thought I had done something wrong.” (She is very sensitive about doing the right thing.) I took her to the bathroom. She was very unsure of herself and needed my help even more than usual. She was still emotional when I took her back to bed.

It was no surprise that she wanted me to stay with her. I got in bed with her and stayed for another thirty minutes. She seemed calm though not asleep. I told her I was thinking about getting dressed and having breakfast and then returning to the bedroom and working in the chair beside her side of the bed. She said that was fine. I was encouraged.

Less than an hour later, she started to get up. She wanted to go to the bathroom again. This time she took a shower and then rested in bed for almost another hour. I don’t recall anything unusual until just before we left for Panera. She said she felt a little sick. Then she said, “Maybe I’m just hungry.” On the way, she was talkative, but she had much more trouble than usual speaking her words correctly. In addition, I was clear about the content of what she was saying. She was delusional. She mentioned people we were meeting or had been with. I really couldn’t make sense of what she was saying. At Panera and on the way home, she exhibited the same symptoms. They were noticeably more severe than in the past. Before finishing her muffin, she took it off her plate and set it on the table. Then she picked up every crumb that was on the plate until it was spotless. This is something I have seen her do a few other times. Occasionally, she does the same thing with the table top.

I began to wonder if she might have had a TIA, but the only symptoms she had were ones that she has had before, and they didn’t seem to be like those we generally associate with a stroke. Nevertheless, I gave her four baby aspirin as soon as we got in the house. She was very tired and lay down on the sofa.

Only minutes later, the sitter arrived. I met her outside and explained what was going on and encouraged her to call me if she needed anything while I was gone. I didn’t hear from her and felt that was a good sign. Generally, by lunch problems like these would be gone. When I returned, she was resting on the sofa. Cindy told me she had eaten a good lunch and had been resting since they returned home.

After Cindy left, I asked Kate if she would like to look at one of her photo books or read something. When I mentioned Anne Frank’s diary, she expressed interest. I picked up the book and sat beside her on the sofa. I read several entries before she said she was tired. She rested about thirty minutes before I suggested that we go to dinner. She was still very tired but got up without a problem.

She was talkative on the way to the restaurant. Once again, however, I had difficulty understanding what she said. I know it involved other people that she thought I knew. She also had trouble with her words. At one point, she said something about “blee.” I finally realized she meant blue.

We sat in a booth at the restaurant, and she wanted me to sit beside her. That happens much more now. She had two cheese burritos. She still had one remaining when I finished my meal. I had cut the first one into bite-size pieces. She tried to do the same with the second one. I offered to help. Instead of eating them, she started moving them around on her plate using her fingers. It soon became clear that she was creating a “work of art.” She tried to explain, but I couldn’t fully understand except that she wanted me to take a picture of the plate of these pieces. She wanted one picture of the plate and piece alone and one with her in the photo. I obliged her.

When we walked up to the counter to pay, there were two other people in line in front of us. Kate was restless. She didn’t understand what they were doing and wanted me to go ahead of them. I explained a couple of times that we needed to wait until they were finished. The woman immediately ahead of us had opened the door to leave when Kate called to her. The woman stopped and looked around. Kate asked her if she would take a picture of the two of us. By now there was another waiting behind me. I started to tell Kate that we should let the woman go. Then I agreed. I told the man behind us to go ahead, but he said he could wait. The woman took our picture. I paid the check, and we headed home.

Typically, I would turn on the news after we are home, but I didn’t last night. It had been an unusual day for Kate. She seemed very tired. Her speech might have been a little better than it was in the morning but not significantly. I thought it was a good time to refocus her attention. I went back to YouTube. We watched a playlist we had seen before and liked. As it did the night before, the music captured her attention from the time I turned it on until I turned it off.

Even better is the fact that today (as of 2:45), I haven’t seen any of the same symptoms that she displayed yesterday.

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Concerned About Not Doing What She Believes She Should

When Kate got in the shower yesterday morning, she got upset. At first, she was using the soap. I told her to use it. Then she got very teary and said , “Will you still love me?” I told her I loved her from the day the day we met and would always love her. She gradually calmed down .

As I was helping her into the car after lunch, she said she wanted to tell me something. Then she said, “You have told me a lot of things, but I know I won’t remember them. Promise me you won’t be mad at me?” I assured her that I wouldn’t get mad and was happy to tell her as many times as she needs to ask.  She said she knew I wouldn’t but some people would. She said, “I know you must get tired of me asking you all the time.” I found her concern about my reaction strange. I felt almost like she was afraid of me. It was hard for me to imagine that because it is so out of keeping with our relationship.

She went on to say something else but stumbled on the words. My interpretation was that she couldn’t understand why she has so many problems. I don’t know that I am correct though I do know this is an ongoing concern of hers. Earlier at Panera she wondered why she does so many “stupid things” when she is so smart. Periodically she talks about being smart. I think that is because she is aware of so many things she does that seem to contradict that. I don’t usually feel sad, but this is one of the things that does it. I don’t like to see her suffer.

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More Restroom Issues and Our Visit with Ellen

I am glad to report that I was able to get Kate up with sufficient time to arrive at Maggiano’s fifteen minutes before our noon reservation. I want to say in passing that Kate did not want to get up but was in a cooperative mood and got up with a little urging. After going to the bathroom and starting to get dressed, she wanted to lie down again. She seemed quite tired, and I gave her a few minutes to relax.

Before arriving at the restaurant, I decided to use the valet. Previously, we have found parking easily at that time of day, but it is getting to be more trouble for Kate to walk. In the past, I tried to give her this opportunity to walk because she needed it. At this stage, my priority has shifted. Now I am influenced more by Kate’s convenience than her need for exercise. That worked well yesterday, and I will use it next time we are there.

Our meal went well. We had an appealing server, and the manager whom we have met on previous occasions dropped by our table to speak. Ellen’s memory care facility is located about forty minutes from there. I suggested that it would be good for both of us to use the restroom before leaving. As we arrived at the door of the women’s room, a lady was coming out and told me no one else was in there. I walked in with Kate and took her to the stall. Then I went to the men’s room and returned to wait for her just outside the door. In a couple of minutes, a woman came out and asked if my wife was inside. I told her she was. She told me it sounded like she may have been having some trouble and that no one else was in there. I went in to check on her. She was still in the stall. She said she was all right and was just coming out. She wasn’t sure how to open the door that she had locked with the latch. I was able to poke my finger between the door and the side of the stall. That enabled me to show and tell her how to lift the latch. That went smoothly.

She came out and I was about to walk out when she said, “Don’t leave me.” She looked a little panicked as though I were forsaking her. I remained with her and helped her dry her hands and arms. This may seem like a little thing, but when she washes her hands or brushes her teeth, she almost always washes her arms and, sometimes, her face. In the process she can get pretty wet.

We finished up and left the restroom before anyone else came in. Then we made our way to see Ellen. She was sleeping in her wheelchair in front of a football game on TV along with several other residents. She awoke quickly and was glad to see us.

The visit went well, but it was different that those in the past. During the past year and a half her speech has declined significantly. We could understand very little of what she said. We only picked up snatches here and there. Once in a while, she would say something in a short complete sentence. Then we wouldn’t understand anything that followed.

Ellen may have recognized the problem as well. I know she wanted to move around more than in the past. Previously, we have stayed either in her room or one of the other public spaces. This time we started out in the activities room. It wasn’t too long before she wanted to go to the main open area between five or six resident rooms on one side and an equal number on the other. From there we went back to her room. Then she wanted to go around the entire interior of the facility that consists of two other “neighborhoods” identical in design to the one in which she lives. She is wheelchair bound, and this may be her way of “walking around” the way other residents in memory care walk “around and around.” We ended up at the table where she eats her meals. It was about forty-five minutes before dinner, but she wasn’t the only resident who had taken a seat early.

Just before we left, another resident in a walker stopped by and told us she was having a bad day. She mentioned several things that had happened to her that day including losing her purse. I doubt if any of these things happened, but Kate and I sympathized with her. She seemed to appreciate that and said so when we left. We had another conversation with a resident as we entered. We had seen her on a few of our previous visits.

We were there almost two hours and around a lot of other residents as well. Sometimes I am concerned about how Kate is responding to being in a memory care facility. She could easily qualify to be in memory herself. Does she ever think about this? I don’t think so. I haven’t seen the slightest indication that she sees herself like any of the residents. Does she even understand that all the residents she sees have some form of dementia? Again, I think not. I doubt that she has a grasp of what dementia is. She knows she has problems, but I believe she still sees herself as normal. When Kate was at an earlier stage, I avoided taking her with me to visit friends in memory care. Now I don’t think she processes much about the nature of the facility itself or the residents who live there.

Despite the restroom incident, the day had gone well. Nothing happened that would make me think we should stop coming to see Ellen. I say that even though Kate can’t remember who Ellen is before we get there. While we are there, she seems to sense the connection. That, and the fact, that Ellen clearly remembers us is enough for me to continue our visits though I know we are approaching the end.

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An Update on Eating Out

As I have expressed in other posts, a variety of things have played a role in how well Kate and I have gotten along through six of the seven stages of Alzheimer’s. I believe that nothing has been more important than our eating out for lunch and dinner. That has kept us socially active without having to depend on our friends. Of course, some of our eating occasions are with friends, but we almost always dine alone. There are notable exceptions like our three music nights a month at Casa Bella when we sit with two to six others. In addition, we met a couple at these music nights with whom we eat on other occasions at least once a month.

Now that she is in the last stage of Alzheimer’s I see more signs that her symptoms could ultimately be a bit of a problem with other people. For quite a long time, she has been a “messy” eater. She is even messier now. She regularly drops food on the table, the floor around her, and, of course, her clothes. When her meal includes items that she doesn’t like, she often takes them out of her mouth and puts them on the table. If we are sitting close enough, I reach over and put them on my plate, in a paper napkin, or another appropriate place.

I have gotten rather accustomed to her frequent use of her hands rather than a fork which is especially common when she eats a sandwich. She almost always takes it apart and picks up the various pieces (cheese, tomato, or meat) with her hand. Depending on the amount of sauce or other condiments, that can be messy.

At lunch on Saturday, she did something she hasn’t done before. Our server brought us a piece of cheesecake. After she placed it on the table, I asked her a question. She started to answer when I noticed that she was looking at Kate. I looked at her and saw that she had picked up the whole piece, taken a bite out of it, and placed it back on the plate. This was not a problem for either the server or me although the server was surprised. She is aware of Kate’s diagnosis and is very understanding; however, it is only recently that she has had the opportunity to witness some of her symptoms. Things like this do make me think about what might lie ahead.

There are also times when I say or do something that bothers Kate, and she snaps back at me. The other day at a restaurant she placed her sweater over the back of her chair. It apparently didn’t feel right when she leaned against it. I asked if she would like me to put it on the back of an empty chair beside us. She looked like she didn’t quite understand me, and I reached over and took the sweater from her chair. I don’t remember what she said, but she quickly gave me a sharp response as the server approached our table. I apologized to Kate and put the sweater back. It turned out that she was then embarrassed to have spoken to me like that. She had tears in her eyes and said to the server, “I’m sorry. I shouldn’t have said that. I want you to know that I am not usually like that.” That is very true, and I suspect the server recognized that as well. She has served us many times in the past few years and never observed anything like that before.

I believe that all our servers and the people with whom we eat are also understanding, but I wonder if there is a limit to which I should go in putting Kate in situations where some might not feel the same way. For the moment, I am optimistic that we will be able to continue eating with others for quite a while; however, I am going to be watching very carefully to sense what is best in the future.

Last night at Casa Bella we encountered an entirely different kind of situation that was a lesson learned for me. Two months ago, we learned they were sponsoring a special Italian dinner that occurred last night. It sounded like the kind of event we would enjoy, but I was concerned about two things. First, all seating was to be outside in the street in front of the restaurant. Kate is very sensitive to heat, and September can still bring hot weather. Second, I wasn’t sure about the seating. Big crowds are confusing for Kate, and I didn’t want to be seated with a group of strangers that might add to her confusion. On the other hand, I wanted to support the owners whom we have come to know the past few years. I talked with them and learned that we would be seated with the same people with whom we normally sit. I decided to take a chance and attend.

As it turned out, I wish I hadn’t. It was 90 degrees when we arrived and didn’t drop a lot during the meal though it felt better after the sun went down. The gnats were there in abundance as well. The benefit of being seated with our regular couples was offset by the noise level. The tables were under a large tent to protect from the weather, but I think that contributed to the noise. It was very difficult to converse. Everyone was asking everyone else to repeat what the other person said. Kate remained quiet except to make noises associated with gnats that periodically flew in her eyes.

Given all of this, Kate took it quite well, but I could see I had made a mistake in deciding to come. I was glad we hadn’t shown up for the cocktail hour that preceded the dinner. We were the first ones to leave shortly after finishing our meal. I have been very careful to avoid situations like this in the past. I should have done that this time.

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And More Emotional Experiences

When I arrived home to relieve the sitter on Friday, Mary heard me open the door and told Kate I was home. I walked into the family room. Kate had been resting on the sofa and gotten into a sitting position when she saw me. She had a big smile on her face but immediately burst into tears. She couldn’t stop and continued until after Mary had left. I sat down with her and we hugged. She said, “I’m so glad to see you. I was so worried.” This was the way she had reacted when I returned two weeks ago. There was one big difference. She didn’t recover as quickly. Over the next thirty minutes, she continued to express how happy she was to see me. It wasn’t until we went to dinner that she had fully calmed down.

Last night Kate had a very traumatic experience involving a delusion that I had had a fight with her mother who died in 2005. The way she described it this was something that she had just overheard. She had been in bed for about an hour, so I suspected that she had had a dream. After reflecting on it, she probably had never gone to sleep. On several previous occasions, I have noticed that she has had similar experiences, but this one was definitely the most intense. She was angry with me. As I tried to calm her, she shifted her story. Then it sounded like the fighting was between her mother and father. A few minutes later, she settled into its being between our neighbors.

Several times she said she wasn’t going to talk about it anymore. Then she would continue. She kept talking about the “foul” language they were using and how sorry she felt for the children. She was so upset that she said she wanted to move out of the neighborhood. Trying to calm her, I played along as though I believed what she said and suggested that we might talk about moving in the morning. I knew that it would all be forgotten then. I also diverted her attention by talking about how fortunate we have been to have a marriage that has been free of the kind of fighting that she had observed. That seemed to work. She settled down, and we called it a night. The entire episode lasted about an hour and a half.

On the way to lunch today, I played some music. She cried during “Try to Remember.” This is a song she likes, but I don’t recall its leading to tears before. Then at lunch our server approached the table to give Kate a hug. As she did, she said, this is a day when I really need a hug. Then she proceeded to tell us that her neighbor’s dog had killed her cat this morning. That was all Kate needed to hear. She was in tears, and the server felt bad about having said anything.

It’s not just the tearful emotions that are elicited so easily. This morning as well as other times recently, Kate has responded to me with anger when I tried to help her with something that she wanted to do on her own. She is very much on edge now.